Press Releases

Global Genes | RARE Project Host Patient Advocacy Summit at the Balboa Bay Club on September 28, 2012

July 10, 2012

Join Us

September 28, 2012

9am to 3pm
Balboa Bay Club, Newport BeachCA


Global Genes | RARE Project will host the first annual Patient Advocacy Summit, where patient community participants can hear directly from and engage in dialogue on various topics to educate and inform.  A major challenge facing the RARE Disease community is the lack of significant, open and regular communication on common issues of broad interest.  While each rare disease is unique from a scientific standpoint there are common social issues which span the entire community.

The event will be highly interactive. Panels and discussion will be prioritized over formal lectures and presentations. The outcome is not pre-set, it will be a collective effort based on the interactions of the participants. This annual summit is open to all in the rare disease community that wish to participate and is FREE.

Tentative Agenda

Friday, Sept 28, 2012 | 9am – 3:00pm

9:00 Introductions – Sharing our Common Ground

10:00 RARE Advocacy – You Have the Power

10:50 Break

11:00 Innovative Technologies & Platforms

12:00 Working Lunch – Table-Topic Focused Networking

1:00 Building Healthy RARE Disease Communities

2:00 Break

2:15 Communicating with the Public

2:45 Collaborations, Re-cap, Next Steps, Wrap Up

3:00 Closing Remarks

Finding, aligning, and acting on this common ground will further empower the rare community to establish a powerful shared, vibrant, and global voice that will lead to increased awareness, support, actions and response.

For more information